Written evidence from Royal Mencap Society HAB0151

About Royal Mencap Society and Learning Disability

We support the 1.5 million people with a learning disability in the UK and their families to change laws, improve health, and care services as well as access to education and employment.

We also directly support over 5,000 people with a learning disability to live their lives the way they want. This support goes to the heart of what we do to support people with a learning disability. A learning disability is caused by the way the brain develops before, during or shortly after birth. It is always lifelong and affects intellectual and social development.

1) How could the DWP improve the quality of assessments for health-related benefits?

Accessible information

Claim forms should be easily available, including in Jobcentres, in accessible formats such as easy read. It is critical that all key communication and forms – including PIP2, appointment, and decision letters, are available in easy read format. Jargon-filled inaccessible information can heighten anxiety in people with a learning disability and creates a persistent fear of being sanctioned without warning.

DWP should give claimants the option to select the channel of communication that best suits them and their needs (e.g., telephone, in-person, online or by post). Claimants should select how they receive information, applications, and assessments, and the Department should allow them to change this preference at any time. Offering people, a choice in how they interact with the DWP and in how assessments are carried out, is critical to improving claimant’s experience.

Reasonable adjustments

Many claimants with a learning disability will need support not just with initial claims, but also with maintaining and updating existing claims. Mencap support’s the Department’s efforts to identify people with enhanced needs and flagging their reasonable adjustments within the DWP system. However, this information needs to be shared across benefit services: there should be a “tell us once” service, across all DWP-administered benefits, for reasonable adjustment requests.

Part of these reasonable adjustments is ensuring that DWP personnel have sufficient time to support people with a learning disability. Increased focus on targets would limit DWP personnel’s ability to effectively support people with a learning disability.

Finally, the Department needs to produce better guidance and increase awareness among claimants that they are allowed to bring a companion to the assessment - whether that is a friend, family member, carer or support worker.

Application process

Forms should not need to be returned within an arbitrary time limit. We know that for many people, four weeks is not enough time for people to complete the PIP form, and arbitrary time limits put unnecessary pressure and stress on claimants. Many are unaware that it is possible to request an extension. In a recent focus group, one claimant said:

“I have got PIP for years because I have a learning disability and other health conditions. It doesn’t get easier [to apply for PIP]. It takes so long to do it and it’s a lot of work to get all the evidence. They ask so many repeat questions. It’s confusing and the form is so long. I need help on it every time. It’s stressful and a lot of work.”

People need to be made aware that they can apply for extensions and supported to gather the necessary evidence during that time.

The DWP should produce simplified claim forms in consultation with disabled people and disability organisations. Claimants should be provided with information explaining the criteria and how they are scored (not just made available digitally), to make it easier to fill out the form, and improve the quality and relevance of information given on the form. This would lead to assessors being able to make more paper-based decisions.

Evidence gathering

We welcome the Department’s commitment rely to a greater extent on paper-based assessments. Increasing paper-based assessments will reduce anxiety, shorten the process, and improve trust among claimants. For this commitment to be realised, DWP will have to weigh more heavily a claimant’s own evidence of their condition and the supporting evidence from people close to the claimant. Only if it has not been possible to gather enough information to reach a decision, or when a claimant requests it, should a face-to-face assessment be arranged.

At present, it is not clear on the claim form whether it is the claimant or the assessment provider who is responsible for gathering supporting evidence. The DWP must be clear that providing details to does not guarantee they will be contacted.

The DWP must provide better guidance on what constitutes good evidence not just for individual claimants, but also for those providing the evidence e.g. healthcare professionals, family, friends and carers. Good evidence corroborates the claimant’s account of how their disability or health condition impacts their daily life of the claimant and is not a medical summary of their conditions.

Older evidence can still be relevant, many conditions, like learning disability, don’t require constant reviews with a specialist once there has been diagnosed. To simplify processes, there is the potential for appropriate data sharing of medical evidence to be introduced across benefits. Where the same evidence (e.g., confirming a particular condition) is required for both WCA and PIP and someone has already applied for one of the benefits, DWP should seek consent from the claimant to share this evidence. This could streamline the process and save claimants time and effort. However, this must be subject to the required data protection safeguards, and only done with explicit consent and permission from the claimant. Similarly, DWP should pre-populate an application with known information from a claimant, to save time and resources for the individual and the department.

Additionally, assessors should be obliged to proactively gather and review all the supporting evidence, and where their judgement of a person’s capability differs from the individual, and the evidence, give a clear explanation as to why.

Mencap wants to empower people to achieve their aspirations. Many people with a learning disability stated that it is demoralising and degrading to describe in detail your limitations, particularly when they have not changed since your last assessment. DWP should increase the length of awards for people with a learning disability to decrease the financial and resource burden on the department, and stress for the individual with a lifelong condition.

Assessors' reports

Many people with a learning disability tell us that the assessor's report does not accurately reflect them or what they told the assessor. This can include omitting significant details, the assessors account differing to that of the individual being assessed, and observations which aren’t backed up by evidence or are inappropriate or irrelevant.

“I had to go to appeal. I had to appeal it because the report wasn’t about me. They said I could do things that I need help with. I don’t know if they didn’t listen to me or didn’t understand [my learning disability].”

Mencap would like to see every claimant receive a copy of their assessor’s report following an assessment. This would increase scrutiny and accountability, raising standards of the report. If the assessor knew that every person they assessed would see the report it would encourage them to take greater care and improve accuracy.

Assessors

A perennial issue with the health assessment process, is assessors' failure to understand someone’s disability or health condition, and the impact it has on their day to day life.

“Sometimes you have good assessors who understand learning disability. But I want to always have an assessor who understood what a learning disability is. I have a hard time explaining what it is”

Having assessors that better understand someone’s condition and symptoms will lead to an overall improvement of the quality of the assessment, the number of people getting the correct decision first-time, as well as improve the assessment for individuals who often find the process stressful, anxiety-inducing, traumatic, and in some cases worsen symptoms.

“[My son] was asked by an assessor what medication he takes to treat his learning disability”

Assessors need to have a more specialist knowledge of the people they are assessing. We acknowledge the logistical difficulty of always matching specialist expertise to conditions, but it is needed to get the right decision the first time. Claimants with multiple conditions should be able to select what condition they feel is most important for an assessor to have expertise in. At minimum, if an assessor does not have specialist knowledge of the condition they are assessing, it should be a requirement that they consult with subject matter experts when making their decision.

1a) Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments, in 2018?

Channels of engagement

One of the most significant improvements in the process since 2018, is the Department’s efforts to expand methods of application and assessment, brought about by the Covid-19 pandemic. The introduction of phone and video assessments, the digitisation of claim forms (PIP), and expansion of resources available in Easy Read format, are all significant improvements.

DWP should continue this work by ensuring claimants have the option to submit their claim and engage with DWP in whatever method is appropriate to them e.g. by post, over the phone, or in person. Similarly, we would like the DWP implement a policy whereby all claimants can select the method of assessment (video, telephone, in-person) that best suits them. Mencap recommends implementing a person-centred approach which enables claimants to choose the assessment format that best suits them. If there is a reason the DWP requires a specific method of assessment based on their condition, in which case, the reasoning should be clearly explained to the claimant.

In our focus groups, some people with a learning disability said they would prefer having a phone assessment because it would not require travel, and they can be assessed in a familiar space. Others stated they would prefer face to face assessments because they feel they are better able to communicate their support needs in person, or because they feel anxiety while using the telephone. We welcome the option of a digital assessment as well, but it should be noted that not everyone has access to digital technology, and some may lack the digital skills required.

Health Transformation Programme

The Health Transformation Programme is also a positive development. The Department must continue to engage with disabled people and people with long-term health conditions, charities and disabled people’s organisations to ensure that the programme continues to follow a test and learn process. We welcome their focus on a combined IT service, simplified claims process, better use of evidence, better signposting, etc.

Lapsing appeals

There have also been improvements in the appeal lapsing and mandatory reconsideration processes. Department must ensure it follows its own guidance on lapsed appeals consistently to ensure that: applicants have the purpose of an offer to lapse clearly explained to them with any access and communications requirements met to facilitate this understanding (including have someone to support them); individuals are not placed under any time pressure to accept an offer; they are not intimidated into accepting an offer, and they are made aware of their appeal rights regarding a new offer. The lapsing process should also be made clear to people, at the point of a negative mandatory reconsideration decision so that people can be aware of what they are, and they know what to expect.

Mandatory reconsideration

The mandatory reconsideration process has been improved, with claimants sometimes being given the opportunity to provide additional evidence and discuss their claim with decision-makers. However, in some cases, claimants are liable to being misled into putting far too much energy into the mandatory reconsideration process and are misled into thinking that it is the final available avenue of appeal. To improve the process, reconsideration decision-makers should not be able to see the not be able to see the previous decision-maker’s conclusions. This would increase impartiality, and likely lead to better decision making. There are too many cases of mandatory reconsideration (MR) reports being copied from the original decision.

3) Do the descriptors for PIP accurately assess functional impairment? If not, how should they be charged?

4) Do the descriptors for ESA accurately assess claimants’ ability to work? If not, how should they be changed?

The PIP and ESA descriptors are too rigid and arbitrary. The points-based system and blanket assessment approach is not suitable. It fails to assess or understand how someone’s disability or health condition impacts specifically on them.

One example of this is the reliability criteria: we know that assessors are not applying the reliability criteria consistently or properly. This is often linked to the use of informal observations. Assessors write observations in their reports which are inappropriate and irrelevant: somebody who can walk from the waiting area to the assessment room, may not be able to walk 20m to the bus stop tomorrow.

Often these observations will be given more weight than evidence provided by medical professionals, family, friends and carers, as well as the individual being assessed, with little explanation as to why. This is especially problematic for people with a learning disability, as the people close to them most understand the barriers they face and can provide a full picture of what support or adjustments a person might require to lead a full life.

For example, in a focus group, one claimant and their carer gave the example of cooking. The claimant is proud of her abilities, and when asked about her capabilities in an assessment would say things like “I can use knife to cook” but the carer is able to add, “Yes, she can. We are working hard at this skill. But she requires supervision and support to use a knife consistently.”

We recommend that the reliability criteria and the definitions must be embedded within the wording of every descriptor: assessors’ reports must set out evidence why they consider that each activity can be carried out safely, to an acceptable standard, repeatedly, and in a reasonable time.

6) How practical would it be for DWP’s decision makers to rely on clinician input, without a separate assessment, to make decisions on benefit entitlement? What are the benefits and the drawbacks of such an approach?

Clinicians, people’s healthcare professionals and teams often know their patients well, both medically and holistically. It’s essential their evidence is given appropriate consideration. Utilising clinical input enables decision-makers to carry out more paper-based assessments. This is very welcome.

The Department has proposed the introduction of a Severe Disability Group which would rely heavily on clinician input. People in this group could bypass detailed assessment and any reassessment. It would build on existing successful measures such as the Severe Conditions Criteria, and would apply to those who don’t qualify for SRTI but have severe, lifelong conditions that won’t improve, including learning disabilities. We welcome the proposed SDG - it like a positive step to prevent people being reassessed unnecessarily.

There are some considerations in relying on more heavily on clinician input. Firstly, a clinicians’ expertise is often in the diagnosis and treatment of a condition, rarely do they explore all the ways the condition impacts the daily life of their specific patient. This means that while a clinician is likely to have a better understanding of the impact that condition or disability is likely to have on their ability to work and on daily life, they may not have a full understanding of all the specific ways that condition or disability does impact on that individual. For this reason, clinical evidence should be generally used to corroborate a claimants’ own account of the impact of their condition, not as an end in itself.

Secondly, many people with a learning disability do not have access to a clinician. This should not be taken to mean that their learning disability does not have a significant impact on their daily life.

Thirdly, this approach could also put additional demands on a health service which is already facing pressure. The amount of time required by clinicians to gather and give input would needs to be considered.

Despite these concerns, we support clinical evidence being given much more weighting than it currently is. Clinical evidence, as well as evidence from family, carers and other people who know the claimant, should be weighted more heavily than the assessors report. And in appropriate cases e.g. claimants with more severe and profound learning disabilities, clinical evidence should be relied upon without the need for a separate assessment.

7) Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimants. Why is that?

The culture of tribunals is very different to that of the DWP. The culture of DWP seems to focus on rooting out ‘fraud and error’ and using tactics like informal observations to ‘catch out’ claimants, tribunals seem to start from the point of believing the claimant and wanting to understand their situation in detail, disbelieving claimants only when the evidence does not corroborate their account of their condition.

As such, tribunals approach evidence much better than DWP. New oral evidence is often cited as a reason for a decision being overturned, but this evidence should have been considered the outset of someone’s claim if the assessor had carried out a quality assessment in the first place. Tribunal hearings give this new oral evidence and other supporting evidence equal weighting to the assessment report, listening to the individual. People feel they are given more time to explain themselves, their condition and the impact it has on their lives.

Additionally, a tribunal panel consists of a legally qualified judge, and up to two other independent people, including a doctor and sometimes a disability expert. Having an appropriate or specialist level of knowledge and understanding means the panel is in a much better position to understand the impact of someone’s disability or health condition on their day-to-day life, and employment needs.

We are concerned that many people with a learning disability choose not to appeal unfair decisions because the process is so lengthy and stressful. We suggest the number of cases which go to appeals does not accurately represent the proportion of decisions DWP makes correctly.

7a) What could DWP change earlier in the process to ensure that fewer cases go to appeals?

More needs to be done to make sure the Department get their decisions right first time. We suggest employing more staff that have lived experience of disability and long-term conditions.

Decision making needs to be more like the tribunal approach – compassionate and respectful, better-informed, inquisitive, and give proper weight to evidence provided by the individual, family and friends, and carers. The DWP should assume the applicant is telling the truth, using assessments, medical evidence, and supporting evidence to corroborate the claimant’s account of their condition. The DWP should end the use of informal observations in assessments.

To increase impartiality, those looking at a decision again should not be able to see the previous decision-maker’s conclusion.

Full audits should be conducted of decisions that are subsequently changed at tribunals. There should be a better feedback loop from a decision being overturned to the person who made the initial decision/assessment. Assessors should be made aware when their decisions are overturned at tribunal and the reasons for this, to help identify where things could be done differently and better. This will help restore confidence in the system and provide ways of improving decision making. There should also be better training for assessors and decision makers, which incorporates learning from tribunal decisions and from claimants’ representatives.

8) Is there a case for combining the assessment processes for different benefits? If not, how else could the Department streamline the application processes for people claiming more than one benefit (e.g., PIP and ESA)?

Mencap is strongly opposed to the combining of PIP and ESA assessments. Firstly, PIP and ESA are different benefits, assessing different things which requires different information. Some people with a learning disability may require support from one benefit and not the other. Moreover, people with a learning disability face extra costs irrespective of their income and employment status.

Secondly, having a single assessment, could knock out all financial support, leaving the claimant in serious hardship. There are too many problems with the current assessment process for both PIP and ESA which could lead to inaccurate decisions being made.

Instead of combining the assessment processes, the Department should focus on improving the quality of the current assessment process, including how it uses the information it collects and as the question suggests streamlining the process for people with a learning disability. To do this, the DWP should only conduct assessments where necessary, relying on paper-based reviews of existing evidence – especially for health conditions and disabilities, like a learning disability, which will not change.

“It is frustrating to tell [the Department] again and again [about my learning disability]. The process is so long and so stressful. It is the most stressful thing. If you can do anything to fix that, please do it!”

With the express permission of the claimant and appropriate data safeguards, the DWP should share evidence between claims (e.g. PIP and ESA).

9) What are your views on the Department’s “Health Transformation Programme”? What changes would you like to see under the programme?

We are encouraged by the Health Transformation Programme, particularly the work to combine IT services as this will enable the Department to share evidence between benefits and reduce the number of repeat assessments. We also support their focus on simplifying the process and getting the right outcome quickly. The work to ensure individuals given more choice about how they interact with the DWP, and better signposting to other support and benefits that might be able to help the claimant are also welcome. We are looking forward to continuing to engage with the DWP on how it is designed and delivered.

b) What would be the benefits and drawbacks of DWP bringing assessments ‘in house’, rather than contracting them to external organisations (Captia, Atos, and Maximus)? In particular, would this help to increase trust in the process?

The priority is that the DWP improves the quality of the current assessment process to get more decisions right first time and make the experience better and less stressful for people When people with a learning disability require support, they are not speaking to us about the division between contractors and DWP. They are talking to us about their experience. Our focus is on the communication between the two bodies, and the transparency of that communication.

10) What lessons should the Department learn from the way it handled claims for health-related benefit claims during the pandemic: for example, relying to a greater extent on paper-based assessments, or using remote/telephone assessments?

10a) Is there a case for making some of the changes permanent?

During the pandemic, the move to remote assessments was welcome and should continue. The communication needs and preferences of people with a learning disability are diverse, while some people may prefer digital services and remote communication, others may not have access to technology, or lack the technical skills necessary. Some people may prefer face to face support and assessments, for others this may exacerbate their anxiety.

The focus should be on extending claimant options, not making services digital by default. Online and virtual assessment processes are not always accessible to people with a learning disability, as they may not have the digital skills required to engage with the Department in this way. Where an assessment beyond a paper-based one is deemed necessary, the Department must offer a variety of assessments, and one that best meets the needs and circumstances of the individual claimant. The DWP must give people more information and details on assessment methods, so they are able to make an informed choice.

The assessment method must be chosen by the person being assessed.

12) DWP believes that applications for some benefits dropped sharply at the start of the pandemic because claimants weren’t able to access support (for example, from third sector organisations) to complete their applications. What are the implications of this for how the Department ensures people are able to access health-related benefits consistently?

12a) How can the Department best help the third sector to support claimants in their applications?

There is clear evidence that a claimant is more likely to get an accurate decision the first time if they have received support with the process. Mencap supports recent discussions within DWP at the importance of advocacy services. This supportive approach to claimants is encouraged, and government funding for an advice and advocacy network – whether via the DWP or otherwise – would be very welcome. However, this advocacy service must be separate to DWP. Advice should be given by independent providers who can provide holistic support for people’s needs. DWP cannot provide independent advice or advocacy services to claimants in disputes with itself. An advice agency requires whole autonomy to take up cases or challenging DWP decisions.

Instead, DWP should consider what advice and advocacy services are available locally, and fund services where there it identifies gaps, in consultation with other key stakeholders and the advice sector itself. The Government should fund an independent advice and advocacy network made up of Local Authorities, peer networks, VSCEs, and community-based organisations. This would support parity of access and consistency of high-quality advice across the country. Also, relying less on remote signposting and more on direct referrals and warm handovers would improve service provision.

13) DWP recently published research on the impact of applying PIP or ESA on claimants’ mental and physical health. What would be the best way of addressing this?

People with a learning disability consistently tell us that their mental and emotional well being is negatively impacted by the assessment process. In particular having to go through unnecessary repeat assessments can cause real anxiety and stress for many claimants. Many of whom do not understand why they are being reassessed for a condition that will not change and has been confirmed by their clinician.

“Even letters [from DWP] make me anxious. When I see the brown envelope, I start shaking. I must close my eyes. It's so stressful.”

Another explained:

“It takes me a few days to open the envelope. I leave it by the table to get courage. I need someone there when I open it. I need someone because it’s hard and scary.”

14) What could the Department to do to shorten waits for health-related benefits assessments –especially for ESA/UC?

14a) How effectively does the ‘assessment rate’ for ESA cover disabled peoples’ living costs while they wait for an assessment? Is there a case for introducing an assessment rate for other health-related benefits?

The assessment rate for ESA is currently not high enough to cover disabled people’s living costs, in fact we would argue that current rates of all disability benefits are inadequate. Although benefit rates are normally uprated annually according to an index of inflation (except for years in which they have been frozen), the initial amounts to which that uprating is applied have not been assessed for adequacy. It is our understanding that there has been no official assessment of adequacy since an unpublished internal study in the early 1960s (and not acted upon).

One of the key drivers of financial inequality for many people with a learning disability is the level at which the Minimum Income Guarantee (MIG) is set. This is the amount of benefit money that care users are to be left with once a local authority has levied its care charges. This amount varies depending on individual circumstances but, for example, the level for a single disabled person aged 25-64 is £91.40. These amounts are set by central government, originally in regulations that were set in 2015 after the 2014 Care Act came into force. Since then, rates have remained static, despite inflation increases in most living costs. As part of its social care charging reforms announced at the end of 2021, the government has said it will increase the MIG by 3.1%. Mencap believes this is wholly inadequate to reflect the inflationary rises that are taking place currently and the increasing practice of local authorities to retain all income above the MIG (the amount they choose to retain is discretionary).

The other safeguard built into the care charges policy is the concept of Disability Related Expenditure (DRE) which aims to enable disabled people to retain money to pay for the cost of facilities, etc. that disabled people needs as a result of their disability. However, evidence suggests that the scope of the DRE is being increasingly narrowed by local authorities, which we believe averages around £5 per week. This clearly does not reflect the scale of additional costs that disabled people face. Mencap is calling for a year-on-year rise in the MIG in line with RPI so that people are able to withstand the rising living costs they are experiencing.

16) How effectively does DWP work with stakeholders –including disabled people –to develop policy and monitor operational concerns about health-related benefits?

16a) What steps could the Department take to improve its engagement with stakeholders?

There has been an effort to improve engagement between the DWP and disabled people, and disability charities recently, but this could always be improved. More notice could be given of upcoming consultations rather than vague timescales, more time should be given to respond, and all DWP consultations should be produced in Easy Read format. It’s not always clear whether the contributions we make in stakeholder forums is used and acted upon, or where it meets resistance. In response to queries and suggestions, we often hear “We will have to take that away”, while we typically receive a response (which is very much appreciated), we are not given the direct contact to discuss the response. This makes some DWP process decisions opaque. Greater transparency of process and decision making will facilitate better trust among stakeholders.

May 2022